The last time I saw a movie with my husband – a real movie, in a movie theatre, with a giant bucket of popcorn to share – my firstborn son was about a year old. Because we just had the one child back then, and because one-year-olds who aren’t yet fully mobile are easier to manage than hyperactive eight-year-olds, my ageing mother-in-law was able to babysit.

We have gone out on other occasions, of course. We are regular patrons of a nearby dinner theatre that’s run in a barn – if once or twice a year can be considered “regular”. We go to the annual Christmas gala organized by my employers, and on the odd occasion, we’ll go to a party or a wedding.

For the most part, though, our outings include the kids. We frequent parks with slides and swings, and we go to restaurants where the waitstaff bring paper cups filled with crayons along with menus that the kids are allowed to draw on.

I am always hearing and reading about the importance of a couple going out on their own to spend time just with each other. I fully subscribe to that idea, and from time to time my husband and I make a commitment to have a date night once a month. But the logistics are so difficult.

People often assume that living with my mother-in-law gives us a built-in babysitter whenever we need it, and while that may have been true to an extent at one time, it’s not anymore. My mother-in-law is almost eight years older now than she was when we went to the movie that time, and instead of having one one-year-old, we have a six-year-old and an almost nine-year-old.

Finding a trustworthy babysitter is hard enough for any parent. There’s something very frightening about entrusting the most valuable things in our lives to people who usually aren’t old enough to vote. And when one of those valuable things is a vulnerable special needs child, the angst about it increases ten-fold.

Most babysitters do not know how to handle a special needs child. We have to find people who have some understanding of autism, are quick on their feet, and have the physical strength and presence of mind to restrain a child for his own safety. If it’s someone who can take the time to actually get to know the child while I am home, so much the better.

Usually, it’s just easier for us to not go anywhere by ourselves at all. But then our relationship definitely starts to take strain, because we are not paying enough attention to nurturing our relationship. Eventually, because of our increasing levels of stress, it starts to take some kind of toll on our parenting, in spite of all our efforts to the contrary.

Last night, we had the opportunity to go out to a concert – meaning that my husband had free tickets – and we had to scramble for a babysitter. The free tickets had come about unexpectedly, so we hadn’t exactly planned for an evening out. I desperately said to my husband that I didn’t even know who to ask.

My husband came up with the perfect solution. He asked M, one of the guys who works for him, if he would be willing to watch the kids for the evening, and M willingly accepted. M has kind of become a friend of the family. We invite him to the kids’ birthday parties, he came over for Easter dinner, and we eat out with him from time to time.

We completely trust M with the kids. He is so used to George’s autism that he doesn’t bat an eyelid when autism-related things happen. George knows him and likes him. James downright hero-worships him, and when we told him that M was babysitting, he practically pushed us out the door so he could hang out with his idol.

Safe in the knowledge that our kids were safe and happy, and that they might or might not tie M to a totem pole by the end of the evening, my husband and I headed into the city to see a live performance by Paul Weller, former member of The Jam and Style Council.

The music was every bit as good as we had hoped it would be, and my husband and I felt that buzz of happiness that you get simply from being with someone you love. M didn’t get tied to a totem pole. The kids behaved like model children. They were like the kids on those reality TV shows after the Super Nanny has whipped the family into shape. M said he would babysit for us again anytime we needed him to.

Last night, my husband and I renewed our intention to have regular dates nights to connect with one another, enjoy each other’s company, and just be.

How important do you think it is for couples to spend time together away from the kids? Is it something you manage to do regularly?

When James was about four, he got himself an imaginary friend. The friend’s name is Albert and his age varies from 3 to 12, depending on the day. According to James’ descriptions, Albert is a yellow monster with tall hair. He stays at home and sleeps while James is at school, and he is responsible for every single mess or piece of mischief-making that we blame on James.

Although Albert the monster features less in James’ incessant chatter these days, he still makes the occasional appearance – inasmuch as an invisible, imaginary monster can make an appearance.

I have come to recognize that Albert has served an important dual purpose in James’ life. First, James talks to him when he’s lying in bed at night, using him to process the events of his day and work through any conflicts he might be experiencing. And second, the monster fuels his imagination. James makes up a staggering variety of monster stories, and it is enormous fun to see where his mind takes him.

Monster hasn’t been around for a few days, but yesterday, someone else showed up.

I was industriously working wasting time on the Internet, and James was dancing around, chattering away to someone or something that only he could see. All of a sudden, he was by my side, telling me about a giant pink rabbit that was bouncing around in the kitchen.

“You should see it, Mommy!” said James, quivering with excitement. “Come on, look at it!”

“But I can’t see it,” I said to him, raising my hands palm-side-up in anI-don’t-know gesture.

Without missing a beat, James said, “Close your eyes and you’ll see it.”

His words instantly infused me with a sense of that childlike magic unique to six-year-olds who still know the true meaning of imagination.

As adults, we only see with our eyes. Most of us don’t take the time to look beyond what is literally in front of us. Children know how to see things with their minds. They can see possibilities of magic where most of us don’t even know there’s anything there. They are the ones who truly have vision.

I did what James suggested. I closed my eyes and really tried to look. And sure enough, there was that giant pink rabbit, dancing around my kitchen.

I will never forget the day my firstborn son cut his first tooth. I had been expecting it for so long that I had almost given up waiting. I mean, the kid was eleven months old and we were starting to think he’d be some kind of toothless wonder.

On the day in question, we were at a music industry trade show with my husband. He was in the main exhibition area, doing whatever schmoozing he needed to do with potential clients and suppliers. I was in the large lobby area with George, listening to a music troupe play a set of traditional African music. People were milling around the crowd, handing out free African drums to the kids. The babies, like George, got African rattles: miniature drums on sticks that have beads attached to them by a piece of string.

George was initially non-responsive to this idea, so I accepted the rattle on his behalf. As soon as he saw how it worked, though, he made a grab for it, and as he opened his mouth in delight, there it was. A tiny little pearly white blip peeking through his gum.

He may have been late getting his first tooth, but he certainly made up for lost time. The poor kid averaged one tooth every three days or so, which was not fun for anyone in the family.

A couple of years later, I got to do it all again, this time with my younger son James. I feel oddly guilty that I don’t remember the appearance of his first tooth (masters of guilt, we moms – we outdo even the Catholics in the guilt department). I do remember that James teethed earlier than George had, at about seven months, and his second and subsequent teeth took a lot longer to show up. There was one time, when James had four or five teeth, when nothing happened for about two months, and I was thinking, “Come on, already!”

Eventually my kids each had a full complement of teeth. Now the next inevitable wait began: when would George start to lose his teeth?

His first loose tooth wobbled around precariously for weeks. We were waiting and waiting for this thing to just give it up and fall out, but it hung on stubbornly, seemingly by no more than a thread. Eventually he lost it, the day before he turned seven. He was biting into his sandwich at the centre where he was receiving IBI therapy, and the tooth just popped out and landed on the table in front of him.

He lost his teeth in much same way he had gained them. Teeth were falling out left, right and centre, and after about a month George looked like a fourteenth-century sailor with scurvy. But with time, the new teeth grew in to replace the old.

At almost nine, he just has a couple more teeth to go. It was initially hard for this sensory-sensitive autistic child to be losing his teeth, but by now he is so used to it that he barely notices it.

When he lost the most recent tooth, there was trouble – not from him, but from his little brother, who is now six. As George wandered around the house looking all gappy-mouthed, I found James weeping quietly in his room.

“What’s the matter?” I asked him.

“George’s tooth fell out and mine didn’t,” he sobbed, as if someone had just stabbed his favourite teddy bear.

“Don’t worry,” I soothed. “Your teeth will start falling out any day now.”

“But I want to have a gap like my brother!”

Try as I might, I couldn’t comfort this kid. I had to let him cry it out. I mean, what was I going to do, yank out one of his teeth?

Three days later, James got his first loose tooth. It hung on for weeks, much like George’s first loose tooth had. For the whole time, James was planning what he was going to do with the money the tooth fairy left for him. To hear the kid talk, you would have thought he was going to get a thousand dollars. I know inflation has hit the tooth fairy since my childhood days, but not quite to that extent.

Finally – finally – the tooth fell out two days ago. It was a near-disaster, though, because James accidentally swallowed it and therefore did not have it to leave for the tooth fairy. Thanks to modern technology, I was able to come up with a mitigation plan: I took a picture of the gap and saved it to my computer. I attached it to a blank email form and told James that if I emailed the picture to the tooth fairy, he would surely get his reward. I even made up an email address. gappysmile@toothfairy.com.

The following morning, James woke up and stumbled sleepily to me while I was getting ready for work, the way he always does. He sat on my lap, and I enjoyed the feeling of him snuggling up to me with his head on my shoulder. All of a sudden, he sat up straight, his little body quivering with alertness. He gasped as if he had forgotten something, and then he slithered off my lap and ran to his room. His eyes were bright with excitement as he ran back to me, holding up the shiny two-dollar coin that the tooth fairy had left under his pillow.

He clambered back onto my lap, and although George’s gaps have long since filled in, James said contentedly, “Now I have a gap. I’m just like my big brother.”

And still clutching his two-dollar coin, he went back to sleep, with dreams of his brother dancing through his head.

You look at parents who have special needs kids, and you contemplate the things you think they are doing wrong. Thinking you know better, you utter sentences that start with the phrase, “If that was my child…”

Until you get handed a diagnosis of autism and realize that, wait a minute, that is your child. You find yourself facing the same challenges as all of those parents you used to be quick to judge, and you find yourself responding in very similar ways.

You have no idea what special needs parenting is like until you are wearing those shoes.

Yes, my child has sometimes been the kid having a very loud meltdown in a grocery store.
Yes, I am the mom who has occasionally snapped needlessly at her kids in public, because she was just so overwhelmed.
Yes, I sometimes let my child play on the computer for longer than is considered ideal, because I am so desperate for time to take a shower.
Yes, I do want to get all available services for my child, but that is way easier said than done.
No, I don’t invite my son’s classmates over for playdates to encourage interaction. They are all special needs kids, and seeing each other outside of school is too weird and overwhelming for them.
Yes, my son’s hair is tangled and unruly. He is terrified of having it either washed or cut, and I just have to do the best I can. I know it doesn’t always look great.
Yes, I vaccinate my kids. I think the autism/vaccine link is pure bumph. I respect anyone who does believe in the link and I expect the same courtesy from them.

And no, I had no clue what special needs parenting was all about until I woke up one morning and discovered that I was now one of them. Many things have surprised me about this journey. There are things both good and bad that I did not expect. Being a special needs mom has taught me a great deal about myself and about other people. One of my biggest surprise discoveries is that I have far bigger reserves of patience than I thought. For the most part, I can stay calm in the face of a meltdown, and do what I need to do to see myself and my son through the storm.

Last week, I used my social media channels to ask other moms the question: just what is it about special needs parenting that has surprised you the most? I got responses that were both poignant and uplifting. Many of them I can relate to myself.

Here’s what other special parents have found surprising about their journeys:

The apathy of most people. If it’s not affecting them personally, they don’t give a crap or they say ” Why should I? It’s not affecting me” (Leigh)

It’s not as bad as I thought it would be. (Jacquie)

How much energy it takes at times…like mid-meltdown… (Lucette)

The lack of community support. I was also surprised by my reaction to that – one of passion and action! (Amy)

How ignorant the NT’s can be (Ron) (For the uninitiated, NT means neurotypical, a fancy term for “typically developing”)

How strong it can make a mother! (Mimi)

How screwed up my idea of success was. (Jennifer)

How uncaring the rest of the community is and how much energy it takes to keep on fighting for acceptance. (Susan)

The fact that we have to fight our school systems for EVERY support and service that will help our kids in the future. (Barbara)

How hard it is to accept offers of help, and how much better it works for everyone when I do. (Ruth)

How strong I’ve become, physically and emotionally…well, most days anyway. 😉 (Megan)

How after a while you stop seeing the special needs, and just see the child. It’s only ever other people who make you notice the special needs again. (Freya)

How hard but rewarding it is! (Hike. Blog. Love)

How much you truly learn from them! And I now know the real meaning of determination. (Vera)

How I have forced myself to re-evaluate some of the values I had about life. Some people will always do “bad” things, our faith in a Higher Power should be our motivation to forgive those people since we ask forgiveness from “Above” and HE forgives indiscriminately (Naadia)

Reading what these parents have to say should send a very clear message that even when there’s a common diagnosis, like autism, everyone’s journey is unique. We all have our own sets of challenges.

So next time you think someone is falling short of what they could or should be doing as a parent, just remember that you’ll probably never have the opportunity to wear their shoes.

April 27 – 5 challenges, 5 small victories: Make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going.

Autism can be a very complicated thing to live with. Its manifestations change from day to day. One day, my son will be able to tolerate loud noises but a small change in routine will send him into meltdown. The next, we’ll be able to turn his entire routine upside down but anything louder than a whisper will set him off. Different strategies work for different kids on different days, and everyone you might see guidance from is convinced that their opinion is the right one.

The things I find most challenging about being an autism mom don’t really have to do with the autism itself. Whatever might be going on with my child on any particular day, I just deal with it. Sometimes it’s hard, but I always know that I’m doing my best, my son is doing his best, and at the end of the day we’ll all survive.

My challenges tend to come from sources other than my son and his autism. I list them in no particular order.

The judgmental critics. It’s a moment every autism parent has lived through at least once. You and your child are in a grocery store, which let’s face it, is a mecca for sensory overload, and your child is getting more agitated by the second. You throw things into your cart at quickly as you can, but just as you get to the checkout, your child reaches his breaking point and explodes. As you are trying to calm him down, some snarky stranger loudly proclaims, “What that child needs is a good hiding.” I once heard someone say (referring to me), “If that mother was doing her job properly, this wouldn’t be happening.” Like I’m not already carrying around enough angst with me. With my social anxiety, I’m not great at the quick comeback, although I’m definitely better than I used to be.

The third-person talker. These are the people who will talk about someone who is present as if that person were not in the room. The chances of this happening increase exponentially if the subject of conversation happens to have autism. I get it all the time. “Would George like a hamburger?” they will ask. My answer always seems to throw them a little: “Ask him,” I say. Yes, it is true that George is not the world’s greatest talker, and may not respond to everything that is said to him. But, you know. At least give the kid a chance to try. If he struggles to answer, I will help him.

Guilt. I was educated at a girls-only Catholic school run by nuns, and I am married to an Irish Catholic man. I can therefore say with some authority that the Catholics turn guilt into an art form. And some of the guilt that I feel as a special needs parent (hell, forget special needs – just as a plain old parent) almost makes me think I should just convert. I feel guilty about everything. Did the Taco Bell I ate during pregnancy cause George’s autism? Did I give him enough affection as a baby? Am I paying enough attention to my other son? Did I get too mad at George when he tipped over the laundry basket? The list goes on and on, and my guilt makes me constantly second-guess myself when I should just be following my parental instincts.

Time. Time very often seems to be my enemy, so much so that I sometimes regard it as a person. Time with a capital T. No matter how much I try, Time seems to run away from me. At the end of each day, there is always something that remains undone. Parenting is my absolute number 1 priority, so my kids’ needs are always taken care of. But I tend to let other areas of my life slip occasionally, and that is detrimental to my physical and mental health.

The Internet. When George was diagnosed with autism five years ago, the first thing I did when I got home was Google autism. I obsessively read web page after web page. Every link that I clicked on seemed to have some information that flatly contradicted something I’d read somewhere else, and in the end my brain was hurting from information overload. I was overwhelmed by not knowing what information to trust. Since then, I am wiser in my use of the Internet and I have learned, for the most part, how to tell the good information from the noise. But the Internet, with all of its gazillion theories about the causes of autism, can still hinder more than it helps a lot of the time.

In my house, there is no such thing as a “small victory”. Every single accomplishment, all of the positive things in our lives – are massive, big things. That’s the way it often is in special needs families. We tend to place extra stock in things that other families take for granted. And as hard as it can be to live with autism, there are many things that I am grateful for, that enable me to keep chugging along even at times when I just want to cry.

Love. Love really does make the world go around. Out of all the challenges my son has, lack of affection is definitely not one of them. Both of my sons give the best hugs that I can carry around with me all day. My favourite moments are when my boys somehow manage to squeeze onto my lap together to give me a hug. I sit there, with my arms full of squirmy, giggling kid, and never want the moment to end.

Running. Yes, running keeps me sane, and when something stops me from doing it – like illness or injury – depression starts to creep in. The fact that it keeps me in good physical health is almost a by-product of running. My prime reason for doing it, along with raising funds for autism, is to keep my mental health on an even keel. I struggle with mental illnesses like depression and anxiety, and there’s no better way to combat my darker moments than a good long run. I am stubbornly resistant to using medication to deal with my issues, and running acts as a decent substitute for chemicals most of the time.

Therapy. It has been said that running is cheaper than therapy, and while that is certainly true, I actually do need both. The therapist/client relationship is a very strange one. It involves the client placing complete trust in someone they actually know nothing about. I have been going to my therapist for a little over a year now, and it has taken me almost all of this time to build up my trust to a level where I can really open up during my sessions. Sometimes the sessions are very hard and they make me feel all weirded out for a while, but the truth is that once a week, I get the opportunity to talk without reservation in the sanctuary of my therapist’s office. I can say whatever I like and there will be no judgment or anger.

Writing. I am somewhat inept as a verbal communicator, and I experience high levels of anxiety in social situations. When I am talking to other people, I hold back a lot, not only because of my natural shyness, but because my brain actually doesn’t work well during conversation. I can formulate a completely coherent thought in my mind, and even mentally phrase how I want to say it, but when it comes time for me to speak, my words get lost somewhere between my brain and my mouth. With writing, that doesn’t happen. I truly have a voice, and I treasure the opportunities to speak my mind on things that are important to me.

The Internet. The Internet is both a blessing and a curse. Despite the evils described in my “bad” list, the Internet is a haven of sorts. I belong to two Internet support groups – one for moms who have suffered pregnancy or infant loss, and one for parents of children with autism. Both of these groups are places where I can vent my concerns, ask for advice, or celebrate good news. Some of my best friends are people who I have known online for a long time, but have never met in person. Here’s the wonderful thing about the Internet: no matter what I am going through on any particular day, I will always be able to find someone who knows, at least to some extent, how I feel.

April 14 – My dream day: Describe your ideal day. How would you spend your time? Who would you spend it with? Have you had this day? If not – how could you make it happen?

Summer 2008

My perfect day…

It is a hot day and the sun is shining brightly. We are on a beach with lots of soft white sand, and the sound of the Atlantic waves fills our ears.

It is our first proper family holiday. I am with my husband and my two children, who at 2 and 4 years, are the perfect age for children to really enjoy a day at the beach. My brother is there too, and so is my mom, who has flown in from South Africa to be with us.

George, who is almost five, has found a new hobby. He lies down on the slope leading down to the water and he rolls himself down, down, down until he feels the waves kissing his body. Then he jumps up, and squealing with delight, he runs back up the slope to do it all again.

Not only is this fun for him, the physical motion of what he is doing seems to give him some kind of sensory input – something that many children with autism crave.

Two-year-old James and I are sitting near the water’s edge, and I am teaching him how to build a sand castle. I use the little shovel to put damp sand into the bucket. I pack it down as tightly as I can, and then turn the bucket upside down. I lift it off and we are left with a perfect tower for our castle. James stands up, and giggling like it’s the funniest thing in the world, he turns around and lets his bum go Plop! right on the tower.

“Again!” he shrieks, laughing so hard he can hardly talk. “Again, again, again!”

So we do it again. And again, and again, and again. We are not making any progress with the sand castle, but we are having a lot of fun.

My husband is in the water, doing battle with the waves. His life has not afforded him much opportunity to swim in the ocean – real ocean with big waves that raise you up and move with you and crash over your head. He turns and waves; I wave back and laugh as a wave hits him side-on, knocking him down.

I see my mom and brother in the distance, returning from a walk along the beach. They meander slowly to me, taking their time, and sit down beside me, James and George, who has finally tired of his roll-down-the-slope game. My husband comes out of the water and joins us. We discuss dinner plans, wonder whether we need to stop on the way back to the house for wine, and bury the kids up to their waists in sand, much to their amusement.

We are together. We are happy. We are family.

Later, as I am riding the waves, I think that there is only one thing stopping this day from being complete, and that is the absence of my dad. But then, as the ocean swirls around me – the same ocean in which Dad’s ashes were scattered thousands of miles away – I look around me, at the sunshine and the white beach where the people I love most are clustered around a smushed-up sandcastle.

As the laughter of my children floats through the air and reaches me, I think that Dad is probably with us after all.